Parents as transition experts? Qualitative findings from a pilot parent-led peer support group

Child: Care, Health and Development

Volumn 37, Issue 6, 2011, Pages 833-840

  Kingsnorth, S ^a   Gall, C ^b,d   Beayni, S ^c   Rigby, P ^a,d  

^a University of Toronto   (Canada)

^b HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL   (Canada)

^c Toronto Institute   (Canada)

^d UNIVERSITY OF TORONTO   (Canada)

Author keywords

Disability; Parents; Special healthcare needs; Support group; Transition

Indexed keywords

ADOLESCENT; AGE; ARTICLE; AWARENESS; CHILD; CHILD PARENT RELATION; FEMALE; HANDICAPPED CHILD; HEALTH SERVICE; HUMAN; INFORMATION PROCESSING; MALE; PARENT; PATIENT CARE; PEER GROUP; PILOT STUDY; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUESTIONNAIRE; SELF HELP;

ADOLESCENT; AGE FACTORS; AWARENESS; CHILD; DISABLED CHILDREN; FEMALE; FOCUS GROUPS; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MALE; PARENTING; PARENTS; PEER GROUP; PILOT PROJECTS; QUALITATIVE RESEARCH; QUESTIONNAIRES; SELF-HELP GROUPS; TRANSITION TO ADULT CARE;

EID: 80054745415     PISSN: 03051862     EISSN: 13652214     Source Type: Journal    
DOI: 10.1111/j.1365-2214.2011.01294.x     Document Type: Article

References (43)

1. Ainbinder, J., Blanchard, L., Singer, G., Sullivan, M., Powers, L., Marquis, J., Santelli, B. & the Consortium to Evaluate Parent to Parent (1998) A qualitative study of Parent to Parent support for parents of children with special needs. Journal of Pediatric Psychology, 23, 99-109.
2. Asbury, J. (1995) Overview of focus group research. Qualitative Health Research, 5, 414-420.
3. Betz, C. & Redcay, G. (2002) Lessons learned from providing transition services to adolescents with special health care needs. Issues in Comprehensive Pediatric Nursing, 25, 129-149.
4. Binks, J., Barden, W., Burke, T. & Young, N. (2007) What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Archives of Physical Medicine and Rehabilitation, 88, 1064-1073.
5. Blum, R., Hirsch, D., Kastner, T., Quint, R., Sandler, D., etal. (2002) A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110, 1304-1306.
6. Borkman, T. (1976) Experiential knowledge: a new concept for the analysis of self-help groups. The Social Service Review, 50, 445-456.
7. Bowman, R., McLone, D., Grant, J., Tomita, T. & Ito, J. (2001) Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 34, 114-120.
8. Brotherson, M., Berdine, W. & Sartini, V. (1993) Transition to adult services: support for ongoing parent participation. Remedial and Special Education, 14, 44-51.
9. Caron-Flinterman, J., Broerse, J. & Bunders, J. (2005) The experiential knowledge of patients: a new resource for biomedical research? Social Science & Medicine, 60, 2575-2584.
10. Creswell, J. W. (2009) Research Design: Qualitative, Quantitative and Mixed Method Approaches, 3rd edn. SAGE Publications, Inc., Thousand Oaks, CA, USA.
11. Darrah, J., Magil-Evans, J. & Adkins, R. (2002) How well are we doing? Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery. Disability and Rehabilitation, 24, 542-549.
12. DeNardo, B., Stebulis, J., Tucker, L. & Schaller, J. (1995) Parents of children with rheumatic disease as peer counselors. Arthritis Care and Research, 8, 120-125.
13. Gall, C., Kingsnorth, S. & Healy, H. (2006) Growing up ready: a shared management approach. Physical & Occupational Therapy in Pediatrics, 26, 47-62.
14. Gibson, B., Darrah, J., Cameron, D., Hashemi, G., Kingsnorth, S., Lepage, C., Martini, R., Mandich, A. & Menna-Dack, D. (2009) Revisiting therapy assumptions in children's rehabilitation: clinical and research implications. Disability and Rehabilitation, 31, 1446-1453.
15. Gold, D. (1994) 'We don't call it a "circle"': the ethos of a support group. Disability & Society, 9, 435-452.
16. Hanley-Maxwell, C., Whitney-Thomas, J. & Mayfield Pogoloff, S. (1995) The second shock: a qualitative study of parents' perspectives and needs during their child's transition from school to adult life. The Journal of the Association for Persons with Severe Handicaps, 20, 3-15.
17. Ireys, H., Chernoff, R., Stein, R., DeVet, K. & Silver, E. (2001) Outcomes of community-based family-to-family support: lessons learned from a decade of randomized trials. Children's Services: Social Policy, Research, and Practice, 4, 203-216.
18. Kerr, S. & McIntosh, J. (2000) Coping when a child has a disability: exploring the impact of parent-to-parent support. Child: Care, Health and Development, 26, 309-322.
19. King, G., Stewart, D., King, S. & Law, M. (2000) Organizational characteristics and issues affecting the longevity of self-help groups for parents of children with special needs. Qualitative Health Research, 10, 225-241.
20. Kingsnorth, S., Lindsay, S., Maxwell, J., Tsybina, I., Seo, H., Macarthur, C. & Bayley, C. (2011) Implementing the LIFEspan model of transition care for youth with childhood onset disabilities. International Journal of Child & Adolescent Health, 3, 547-560.
21. Konrad, S. C. (2007) What parents of seriously ill children value: parent-to-parent connection and mentorship. Omega, 55, 117-130.
22. Kreuger, R. & Casey, M. (2008) Focus Groups: A Practical Guide to Applied Research, 4th edn. Sage Publications, Inc., Thousand Oaks, CA, USA.
23. Law, M., King, S., Stewart, D. & King, G. (2001) The perceived effects of parent-led support groups for parents of children with disabilities. Physical & Occupational Therapy in Pediatrics, 21, 29-48.
24. Magill-Evans, J., Wiart, L., Darrah, J. & Kratochvil, M. (2005) Beginning the transition to adulthood: the experiences of six families with youths with cerebral palsy. Physical & Occupational Therapy in Pediatrics, 25, 19-36.
25. Magilvy, J., Congdon, J. & Martinez, R. (1994) Circles of care: homecare and community support for rural older adults. Advances in Nursing Science, 16, 22-33.
26. McDonagh, J. (2005) Growing up and moving on: transition from pediatric to adult care. Pediatric Transplantation, 9, 364-372.
27. Nicholas, D. & Keilty, K. (2007) An evaluation of dyadic peer support for caregiving parents of children with chronic lung disease requiring technology assistance. Social Work in Health Care, 44, 245-259.
28. Patton, M. Q. (1990) Qualitative Evaluation and Research Methods, 2nd edn. Sage Publications, Inc., Newbury Park, CA, USA.
29. Pitel, A., Pitel, P., Richards, H., Benson, J., Prince, J. & Forman, E. (1985) Parent consultants in pediatric oncology. Children's Health Care, 14, 46-51.
30. Reiss, J., Gibson, R. & Walker, L. (2005) Health care transition: youth, family, and provider perspectives. Pediatrics, 115, 112-120.
31. Rosenbaum, P., King, S., Law, M., King, G. & Evans, J. (1998) Family-centred service: a conceptual overview and research review. Physical & Occupational Therapy in Pediatrics, 18, 1-20.
32. Sandelowski, M. (2000) Whatever happened to qualitative description? Research in Nursing & Health, 23, 334-340.
33. Sandelowski, M. (2010) What's in a name? Qualitative description revisited. Research in Nursing & Health, 33, 77-84.
34. Singer, G., Marquis, J., Powers, L., Blanchard, L., Divenere, N., Santelli, B., Ainbinder, J. & Sharp, M. (1999) A multi-site evaluation of parent to parent programs for parents of children with disabilities. Journal of Early Intervention, 22, 217-229.
35. Stewart, E. & Covington, C. (1992) Parent consultants in the health-care system: a new approach in the care of children with special needs. Issues in Comprehensive Pediatric Nursing, 15, 123-139.
36. Stewart, D., Law, M., Rosenbaum, P. & Willms, D. (2001) A qualitative study of the transition to adulthood for youth with physical disabilities. Physical & Occupational Therapy in Pediatrics, 21, 3-21.
37. Stewart, D., Stavness, C., King, G., Antle, B. & Law, M. (2006) A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Physical & Occupational Therapy in Pediatrics, 26, 5-24.
38. Stewart, D., Law, M., Young, N., Healy, H., Forhan, M., Burke-Gaffney, J. & Freeman, M. (2008) Understanding Transitional Tensions for Youth with Disabilities in Canada: Identifying Key Research Gaps. Penultimate Report: Human Resources and Social Development Canada (HRSDC) [#9136-07-0008].
39. Strauss, D., Brook, J., Rosenbloom, L. & Shavelle, R. (2008) Life expectancy in cerebral palsy: an update. Developmental Medicine and Child Neurology, 50, 487-493.
40. Van Walleghem, N., MacDonald, C. & Dean, H. (2008) Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care, 31, 1529-1530.
41. While, A., Forbes, A., Ullman, R., Lewis, S., Mathes, L. & Griffiths, P. (2004) Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child: Care, Health and Development, 30, 439-452.
42. Young, N., Barden, W., Mills, W., Burke, T., Law, M. & Boydell, K. (2009) Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities. Physical & Occupational Therapy in Pediatrics, 29, 345-361.
43. Young, N., Steele, C., Fehlings, D., Jutai, J., Olmsted, N. & Williams, J. (2005) Use of health care among adults with chronic and complex physical disabilities of childhood. Disability and Rehabilitation, 27, 1455-1460.